“Full support base” needed during Down’s Syndrome diagnosis – parent

…intervention has improved over the years

During and after the diagnosis of a child with Down’s syndrome, parents need a full support system from the health sector in navigating through the process of understanding what comes next.
Azeena Baksh shared her journey through the Health Ministry, as a mother to a child with Down’s Syndrome, reflecting on key support areas needed.
She shared that apart from the healthcare workers, a social worker was also present when her child was diagnosed at birth.

“Not all parents, from my experience from the group that we have, have the same experiences. From the inception, I had a full support base. I think that is what is needed, especially if you are a mom who is going to receive a diagnosis,” she outlined.
Down’s syndrome is a condition in which a person has an extra chromosome. Typically, a baby is born with 46 chromosomes. However, babies with Down’s syndrome have an extra copy of chromosome 2. Down’s syndrome is also referred to as Trisomy 21. This extra copy changes how the baby’s body and brain develop, which can cause both mental and physical challenges.
She called for greater sensitivity to be shown to parents as they go through the acceptance phase.
“What needs to be done is to ensure persons exercise a lot of sensitivity to parents, especially in Guyana where information flow is not so much out there. After that, parents go through the phase of acceptance…and what comes next after that. As soon as you accept, you’re thinking about therapy.”
Presently, she acknowledged that facilities for persons with Down’s syndrome have also been enhanced since her child was diagnosed. With additional specialists, children are given assistance at an early age.
“Diagnosis for kids with Down’s syndrome, especially in Guyana, has changed. I would say that diagnosis now is different from what it was five years ago. I was fortunate to be able to have a healthcare provider who was very kind in doing that diagnosis.”
Baksh further stated, “I have seen a lot more than what was present…Now, we have more physiotherapists. We have more speech therapists, not enough but they’re there. Ptolemy Reid has been very helpful with speech, walking. Importantly for kids with Down’s syndrome is kids to start with early intervention.”
Some common physical features of Down’s syndrome, according to the Centers for Disease Control and Prevention, include a flattened bridge of the nose; almond-shaped eyes; a short neck; small ears, a tongue that tends to stick out of the mouth; tiny white spots on the iris of the eye; small hands and feet; a single line across the palm of the hand; poor muscle tone or loose joints and shorter height.
“Down syndrome is a lifelong condition. Services early in life will often help babies and children with Down syndrome to improve their physical and intellectual abilities. Most of these services focus on helping children with Down syndrome develop to their full potential. These services include speech, occupational, and physical therapy, and they are typically offered through early intervention programs in each state,” the CDC has published.